Daniels battle with Mitochondria Disease
Donation protected
Hello, my sons name is Daniel Derrick Geronime. He is now 20 months old.
On Thanksgiving when he was only six months old he was being very lethargic and not moving his arms or legs. He couldn't control his head. His eyes weren't moving that day and he couldn't stay awake. We couldn't get him to eat and he seemed very cold. He started to throw up and since his stomach was empty it was all bile. After calling the nurse hotline we were told to rush him to the hospital. I loaded him up in his car seat and drove to Radys Childrens Hospital. I rushed him into the Emergency Department and at this time he wasn't staying awake. One of the RNs there came around and was looking at him and took us to get his weight and temperature. He was 15lbs and very floppy. After she got his vitals, we were rushed to the back. I sat on the bed holding my baby. They got his blood sugar level up and once that came back, I was told to put my son down and he was swarmed with nurses and doctors that start trying to put lines in and trying to get him more awake. It was at that time, the scariest thing that has happened to me.
After eight hours of lots of blood tests and getting him stable we were moved to the PICU. At this time we had no idea that was wrong. We didn't know why he stopped eating. There was a few paths they were exploring to try and figure it out. The next few days he was getting lots of test done to figure out what was happening. Daniel still wasn't acting like himself he wasn’t smiling, he was moving his legs but his arms not so much. Then the next day his legs stop moving but his arms started. Which wasn't adding up to one of the theories the doctors were thinking so we adding another to the table. They wanted to do an MRI of his brain and spine.
So we did that. What we didn't know was this would trigger a metabolic condition that would tell us what he had.
On the 4th of December I noticed my sons breathing was off, his heart rate wasn't being normal, his oxygen was lower. And he was in pain. At 10pm I called the nurses in and that is when everything went hectic. Doctors and nurses swarmed in again. Machines were being wheeled in. My son crashed. I was walked out of the room to the waiting room and told to call my husband and tell him to come in. I was told his heart was very weak but they would do everything to keep him alive. My husband arrived at the hospital and we waited in the waiting room for word if he was alive or what was happening. They came out and told us he was on life support. He liver, heart, lungs and kidneys were failing. We had to see him with lines coming out of everywhere. After about 36 hours on life support they needed to put him on dialysis to help his kidneys before they shut down. In his room there were at least two nurses working nonstop with meds and blood transfusions and just running the machines to keep him alive. Right after he crashed my husband and I got our blood drawn and my son also to check to see if he had a metabolic condition. 48 hours later we found out he has mitochondria disease. And his particular mitochondria disease there are three other cases in the world. He is the second kid to survive after being put on life support.
After two weeks he was able to be taken off life support and he was very weak but alive. After 40 days in the PICU we were moved downstairs because he was stable and getting his strength back. Six days after we are being discharged to come home. He has to eat through a feeding tube because he still can't swallow. Every time he pulls that feeding tube out we have to rush him to the emergency room. He is on lot of medication to keep his body healthy with energy.
Mitochondria disease is where your body has a hard time producing energy and when you get sick your body shuts down because it can't run everything to sustain life, let alone thrive.
While he has been in the hospital he has racked up a very expensive medical bill. Our insurance doesn't cover it all. Most of his medication isn't covered. He is now on formula that isn't cheap. Parking fee for all the hospital visits has left us in need of some help. This is a life long condition and every time he gets sick we will be back in the hospital.
If you can please donate to help Daniel out we will forever be grateful. If you would like to help in other ways please let me know as well. Thank you for your time in reading.
At his worst.
On Thanksgiving when he was only six months old he was being very lethargic and not moving his arms or legs. He couldn't control his head. His eyes weren't moving that day and he couldn't stay awake. We couldn't get him to eat and he seemed very cold. He started to throw up and since his stomach was empty it was all bile. After calling the nurse hotline we were told to rush him to the hospital. I loaded him up in his car seat and drove to Radys Childrens Hospital. I rushed him into the Emergency Department and at this time he wasn't staying awake. One of the RNs there came around and was looking at him and took us to get his weight and temperature. He was 15lbs and very floppy. After she got his vitals, we were rushed to the back. I sat on the bed holding my baby. They got his blood sugar level up and once that came back, I was told to put my son down and he was swarmed with nurses and doctors that start trying to put lines in and trying to get him more awake. It was at that time, the scariest thing that has happened to me.
After eight hours of lots of blood tests and getting him stable we were moved to the PICU. At this time we had no idea that was wrong. We didn't know why he stopped eating. There was a few paths they were exploring to try and figure it out. The next few days he was getting lots of test done to figure out what was happening. Daniel still wasn't acting like himself he wasn’t smiling, he was moving his legs but his arms not so much. Then the next day his legs stop moving but his arms started. Which wasn't adding up to one of the theories the doctors were thinking so we adding another to the table. They wanted to do an MRI of his brain and spine.
So we did that. What we didn't know was this would trigger a metabolic condition that would tell us what he had.
On the 4th of December I noticed my sons breathing was off, his heart rate wasn't being normal, his oxygen was lower. And he was in pain. At 10pm I called the nurses in and that is when everything went hectic. Doctors and nurses swarmed in again. Machines were being wheeled in. My son crashed. I was walked out of the room to the waiting room and told to call my husband and tell him to come in. I was told his heart was very weak but they would do everything to keep him alive. My husband arrived at the hospital and we waited in the waiting room for word if he was alive or what was happening. They came out and told us he was on life support. He liver, heart, lungs and kidneys were failing. We had to see him with lines coming out of everywhere. After about 36 hours on life support they needed to put him on dialysis to help his kidneys before they shut down. In his room there were at least two nurses working nonstop with meds and blood transfusions and just running the machines to keep him alive. Right after he crashed my husband and I got our blood drawn and my son also to check to see if he had a metabolic condition. 48 hours later we found out he has mitochondria disease. And his particular mitochondria disease there are three other cases in the world. He is the second kid to survive after being put on life support.
After two weeks he was able to be taken off life support and he was very weak but alive. After 40 days in the PICU we were moved downstairs because he was stable and getting his strength back. Six days after we are being discharged to come home. He has to eat through a feeding tube because he still can't swallow. Every time he pulls that feeding tube out we have to rush him to the emergency room. He is on lot of medication to keep his body healthy with energy.
Mitochondria disease is where your body has a hard time producing energy and when you get sick your body shuts down because it can't run everything to sustain life, let alone thrive.
While he has been in the hospital he has racked up a very expensive medical bill. Our insurance doesn't cover it all. Most of his medication isn't covered. He is now on formula that isn't cheap. Parking fee for all the hospital visits has left us in need of some help. This is a life long condition and every time he gets sick we will be back in the hospital.
If you can please donate to help Daniel out we will forever be grateful. If you would like to help in other ways please let me know as well. Thank you for your time in reading.
At his worst.
Fundraising team: Daniels Parents (2)
Danielle Geronime
Organiser
Conroe, TX
Justin Geronime
Team member
